Good things

Q had a fun week.  In addition to his usual stuff, his Tuesday morning therapies were all cancelled - a big meeting for the therapy place - so he had four mornings of preschool.  He was thrilled to hang with his peeps for an extra day.  Wednesday afternoon, he had a clinic visit with pediatric/special needs dentists in training, and he thought it was pretty spiffy.  He stayed in his chair for the exam and cleaning, only bit the nice lady once, and had a teeny cavity filled (they expect it to sort of heal itself up).  His only regret?  Not getting to play with all the lights and other stuff that were hanging over his head.

Everyone's out, the washer just stopped, the place has been cleaned about as thoroughly as it's likely to be while the kids are these ages, and all's right with the world. 

Three Good Things:
- More running happened this week.  I do not like to run and suck wind, but when I do it more frequently, I love it.  Truly.  It's awesome to feel a little burst of speed up that last hill, to revel in muscle tissue that wasn't there for the last run, to have all kinds of strength that needs stretching.  Love. it.  Interestingly, my knees are okay with it, so far.  Fingers crossed, eyes heavenward.
- This house.  I've been taking inordinate pleasure in cleaning the baseboards, having an organized drawer full of All the Things In the Kitchen that Cut (including knives), and keeping spaces tidied.  The kids seem to be following suit.  Well,  except for their own rooms.  Aherm.
- Friends who drop by and chat.  It's so lovely to have the opportunity to do that, and it's becoming more and more difficult to go anywhere else to just hang out.  Q's needs aren't likely to lessen.  So I'm just grateful for people who make time to just be, you know?

Hope you're looking forward to a lovely weekend, maybe savoring the sun, watching the skeleton trees turn into springtime cotton candy.  XO.

Restless

Q was having a tough time settling down.  Late phone calls.  Ensuing contemplation.  I have such a early morning coming!  (sighdespairsigh)

I other news, let's be praying for each other's families, okay?  I've witnessed some bizarre behaviors lately, and then seen other situations resolving in a fashion that can only be described as high level miracles.  In all of the cases, the kids involved are really benefiting from the steady, calm, predictable behaviors from the grown-ups who are pushing through major discomfort in order to learn new ways to do things. I have such respect for people who do those very hard things in order to achieve better things for themselves and their kids.  It's amazing to watch a process unfold like this.  A bit stunning, as well - I'm a bit gobsmacked when encountering such drastic and visible changes.  (I hear that folks engaged in such grown-up activities are also found to be unusually attractive.  So.  Bonus.)  The other version - people who are so stuck in old patterns, doing things out of a fear-based response, clinging to familiar things which make them feel safe - the situations involving these folks have become so heartrending as to be nearly unbearable to observe.  I cannot imagine the level of difficulty involved in actually living it.

So prayers for families at large are good.

And prayers for the people of Japan, of course.  We've been glad to discover that friends from church who are in Japan are alright, as well as other connected persons.  So much tragedy there, it's hard even to contemplate as an idea, much less absorb as a reality.

Three Good Things:
Everyone here is currently well.
The chocolate pudding I made for supper was delicious.
We ran twice and walked once last week.  (This is a Herculean/Sisyphean thing and my gratitude over having managed to pull it off is rather significant.)

Hope your coming week is lovely and spring-like.  XO.

Crack

So today was an interesting day.  Q had an appointment with a new doc, an endocrinologist.  I had a misunderstanding about childcare, and then there was traffic, parking was a nightmare, and we were late.  When the desk guy came back out to tell me that they couldn't see Q today, I just sort of froze.  They went to get the MA who does the scheduling, so I could reschedule for some time in the next couple of months.

And I just started to cry.  My day had already included several frustrating phone calls, several frustrating kid related issues, a mildly depressing orthopedic note, and not enough sleep - Q needed extra repositioning in the night.

I've never fallen apart in a medical office before, but I learned today that it opens doors rather quickly.  Q and I were immediately shown to an exam room and I was handed a bale of Kleenex.  The nurse came in and spoke softly, and said that the endocrinologist doesn't like to turn people away, so he'd be seeing Q anyway, though it might take some time.

They moved very quickly.  Q had all the vitals, but his BP wouldn't show up - he wanted the tubes and cords and the ensuing waving of his arms kept the machine from getting a good read.  He had a good x-ray of his wee little hand, to look at his bone age (about eight months behind).  And the very nice endocrinologist spent the next forty-five minutes explaining everything from how many bones there should be in his wrist at this age (five, maybe six), versus how many there are (four), to what he's looking for in the bloodwork he ordered.  He showed me the x-ray, and yes, those bones look a little light, despite Q's vitamin D drops.

The bottom line is that there's every reason to expect that Q's pituitary is falling down on the job, and that certain other hormones are a bit off as well.  His pediatrician wants to get a bunch of nutritional panel blood work too, so I'm hoping like everything to roll the endo and PCP draws into just one early morning run to the lab.  Q will return there in three months for the next phase of the discussion.

I didn't connect it at first, but I realized as I waited for the MA to come out that I was standing in the same offices where I sat years ago, now, with a pediatric surgeon to discuss the plan for the baby growing in my belly.  Who does that?  Who has to go sit with a surgeon to look at the options for an as yet unborn child?  Not many people, that's who.  I don't often think about how life here is anything but "normal," but that's exactly it: completely not "normal."  It's really not all glamour and bon-bons, my friends.

And I'm a little fried.

The nurse asked me if I was the only person responsible for all five of these children.  (For a second there, I didn't know what to say.  I mean, holy cow, right?  Who thought this was a good idea?)  I told her that I usually have some kind of back-up, but today was The Day it All Came Apart.  She said, "Yeah,  I thought maybe so.  Seems like you have a lot to keep going and today was just too much."

Maybe so.  I don't know.  I've been fine through the whole "Q will now enter the surgery phase of his life" trend we seem to have going on.  We've done braces with G, umpteen dental, pediatric, and specialist appointments for all five.  We've done a gazillion casting and fitting appointments for splints of various kinds.  We manage about fifteen to twenty loads of laundry a week.  Everyone eats good stuff, the kitchen is clean (don't notice the three cups in the sink, okay?), and things move here (practice, schoolwork, sleep, repeat).  I don't contemplate it because it takes away from the time I need to spend pulling it off, you know?

Anyhoo.

I'm going to stop contemplating now so I can go sleep. 

Three Good Things:
- Apparently, endocrinologists don't so much recommend surgery.  So.  Hooray for that.  And the doc thinks that there's no reason to expect urology to recommend a procedure.  More deeply heartfelt hoorays.
- Fresh, homemade bread, with butter and lavendar honey.
- Smart, funny, kind people who talk to me sometimes.  I heart you.

G'night, all you lovely people. 

Vitamins

Ahhh

I'm so glad it's Friday night.  Crazy week:  snow and wind and crazy cold;  friend with a newly acquired TBI (mild, thank God);  Q was flagging;  slippery roads overwhelmed by very rapidly falling snow;  more medical thinks to think;  weather reminding me of a different place we used to live;  my mom's recouping.

Q seems to have popped back nicely.  It'll be warmer tomorrow and the roads are bare and dry now.  There's lots of good info out there about TBI and said friend is taking appropriate measures.

I am excited to share that Q's PT peeps are looking to nail down another hour every week specifically for power chair training.  Yay!  Tangentially, this brings up a concern of mine:  could we all pray that the gas prices drop and stay down for awhile?  I'm having a heck of a time trying to figure out how to manage the strangely fast-growing expenses.  Food is suddenly significantly more expensive too, and if we're about to be driving more miles...  Well, it brings a little shudder.

Deep breath and on we go, then.

I had another conversation with the pediatrician and we are looking at a referral to urology for a possible procedure.  She's noncommittal about the likelihood of such a thing, but in case youre keeping score at home, we're now up to four surgeries that may need to take place sometime in the next twelve months.  May need to.  I can always freak out later.  For now, I'll get the next appointments scheduled and see what the docs have to say.

A funny for the day.  Because without them, we lose our minds.

Here's hoping that your week-end provides basis for a good week-beginning.  Share some extra hugs around, maybe.  It's been a brutal week for some of the people and we could all use a little extra tenderness, right?

XO.

New blog, good stuff...

Callie's mom is a member of this uneasy club.  What a gorgeous baby girl.

If you haven't read Rob lately, he's totally worth finding too. 

Next up

Q will see a nurse for a skin management protocol on Monday.  He's fine at the moment, but has had abrasions over his vertebrae and scrapes on his hands.  Everyone who works with him is pretty careful, but still.  Good to have the professional input and then a plan.

Meanwhile, I've reserved the right to puke in the backyard at any time, without warning.  What can one say?  I can't think too long about the prospect of multiple procedures, or even one of 'em, without getting ridiculously light-headed.  Not so great.  Still!  It is good to have a plan, no?

Heh, heh, heh.